This dissertation consists of three papers examining differences between racial and ethnic groups in quality and experiences of care for older adults with heart failure (HF), as well as caregivers of patients with Alzheimer’s and related dementias (ADRD). In the first paper, I used data from a nationally representative sample of older adults to examine differences in the intensity of medical intervention received at the end of life by patients with HF. Specifically, I analyzed whether non-Hispanic Black patients with HF were more likely to have a higher number of hospital admissions, more likely to be admitted to the intensive care unit and utilize life support, and more likely to die in a hospital than non-Hispanic White patients. I found that Black HF patients were more likely than White HF patients to experience high levels of treatment intensity at the end of life. Black patients with HF were more likely to die in a hospital and more likely to spend time on life support in the last two years of life than White patients. Additionally, I found that Black patients were less likely to have an advance directive in place at the end of life relative to White patients. In the second paper, I used the same nationally representative sample of older adults to examine factors associated with symptom burden in HF at the end of life. Specifically, I analyzed whether non-Hispanic Black patients were more likely to experience the most common symptoms associated with HF in the last months of life, including fatigue, shortness of breath, pain, and depression relative to non-Hispanic White patients. I found that contrary to expectation, Black patients were not more likely than White patients to experience fatigue, shortness of breath, pain, or depression in the last months of life. In fact, Black patients were less likely to report feeling fatigue, less likely to experience depression, and less likely to report a higher symptom count overall. A range of other factors, including health status, socioeconomic status, health care access, and religiosity, were associated with unmet need for symptom management. The third paper in this dissertation used a qualitative study design and a directed content analysis approach to examine Hispanic/Latinx ADRD caregivers’ perspectives on interactions with the health care system, use of formal and informal supports, and experiences with racism and discrimination in medical contexts. Findings revealed several important barriers to high quality care, including language barriers, feelings of marginalization in medical contexts, a desire for racial and ethnic concordance with providers, medical mistrust, and a need for health care providers to better understand the cultural background of their patients. Findings from this dissertation contribute to the growing evidence base documenting health inequities in quality and experiences of care in chronic illness.
